As You Were With a HeartMate II and Beyond

My HeartMate II LVAD was a life saver. Established, April 2, 2010. The occasional entries for this blog were battery powered for 38 months. I owe continued life to the wonderful people at Thoratec, my cardiologists, Mayo Clinic surgeons, the University of Minnesota Fairview LVAD and transplant teams, and most importantly my caregiving family. On June 8, 2013, I was blessed with a heart transplant and now am no longer bionic. The journey of life continues.

Sunday, April 30, 2017

The Wisconsin state trout season opens early morning May 6, the first Saturday of May. (Same day as the Kentucky Derby).

Just so you know, preparations for the opening of the next trout season begin as soon as the season closes. Fishermen and particularly those who stand in streams waving a stick (fly fishermen) are a different lot.

Fly fishermen are ritualists in season or out. To some, it's an obsession or a religion. Remember, there really is no off season although the streams may be closed.

Catch and release is the order I follow. A trout is too beautiful a creature to catch just once. In my view, the fish always wins. Fly fishing is a state of mind for many of us.

As Thoreau said, some men go fishing all their lives and never realize it's not the fish they are after.

Fly fishermen spend their "off" season days (and some nights) in wistful contemplation of wetting a line, weaving tiny feathered lures, drooling over the latest carbon fiber fly rod, the latest large arbor reel, sorting gear, getting ready...too much to contemplate.

For the past 50 years, more or less, a group of us from all over the Midwest and the Far West have gathered on the banks of Wedde Creek near Coloma in Richford Township in Central Wisconsin, close by the Mecan River. In fact the creek flows into the Mecan, a trout stream of note.

I haven't been in the group that long but I know the fishers well and got a couple of them started in the sport.

Some opening days are sunny and summerlike, but there are just as many overcast and windy days. Rumors of snow are frequently discussed but I personally have never experienced snow in early May. Wool shirts and windbreakers have always been the uniform of the day.

The point of this note is to let readers know that the life of this heart transplant patient continues apace.

We just returned to Fargo (in time for two days of snow, which melted--thankfully--no shoveling required) from a snow-free several months in Arizona.

We left Mesa just as the cacti were beginning to bloom. No Africanized bee activity to report. A brush fire in one of six Maricopa County Parks, Usury Park, was burning but contained. It blackened the sky in the east valley and created a lot of smoke.

My fourth year "heart-iversary" is coming up in June.

Tight lines.*

*when a fish strikes, raising your rod tip until the line is tight, sets the hook and commences the battle. Hence, "tight lines" are devoutly to be wished.

Another year in the life of a heart transplant recipient is a milestone. I received a new heart three years ago today.

A friend calls those heart birthdays--"heart-iversaries."

The wait with an LVAD was 1,164 days. In fact the LVAD was developing issues including potentially fatal blood clots and it would likely not have lasted too much longer.

The LVAD gave me the opportunity to wait on the transplant list until a suitable donor heart became available.

Now, I've had six additional years of life--no small gift. I got the LVAD March 1, 2010, and had it for three years, two months, and six plus days.

I turned 69 years young the week before the transplant operation. It came as a shock because the transplant information is closely guarded until the last possible minute.

I got a call about 7:30 a.m. June 7, 2013, with the question: Are you still interested in a heart? That in itself was a surprise because I'd never expressed a sentiment or hinted in any way that I did not want to be transplanted.

At any rate the transplant coordinator instructed me to be at the local airport in Detroit Lakes, Minnesota in 30 minutes because an air ambulance was en route from Fargo as we spoke. I had a "false start" before where a heart was offered and later (after the flight from Fargo to Minneapolis and after all pre-op preparation) the heart was withdrawn as "not suitable."

My wife and I were literally turned out in the cold of a Minneapolis winter night after the heart was withdrawn. Fortunately, LVAD patients are instructed to carry all of their equipment when going away from home overnight.

As a compliant patient, I carried my "stuff"--eight spare 14 volt lithium ion batteries for the LVAD, a specialized battery charger, a step down transformer and computer that I plugged into at night, miscellaneous electric cords and connections along with wound dressing supplies, and the like to Minneapolis. I needed all of that when the transplant trip became a "false start."

You don't have a clue that a transplant mission could be a dry run. But once the heart was withdrawn, we were on our own to return to Fargo as best we could.

Meanwhile, we've been to Arizona again for a few months over the winter. A desert paradise. Reminder: Every day is a gift.Note: I just found this in drafts. Better late than....

Thursday, May 21, 2015

Walking in the desert for several weeks gave me a better appreciation for what matters most: being healthy and enjoying life.On June 8,2015, I will pass the two year mile stone for survival after a heart transplant. Amazing. My second "heartaversary."My cardiologist has changed twice since June, 2013, and, as would be expected, there have been the predictable and some unpredictable troughs and triumphs. Stay in the game as best you can, is the advice I give, if asked. A day at a time. That means take care of what you have and try to live in the moment. It is harder than it sounds since so many of us are driven by our calendared future events. The track of the past is only a history of where we have been and is no predictor of any future plans or promises. That is not to say that I do not make plans because I do. But planning guarantees nothing. You can plan the plan but not the outcome. Times, conditions and things change. I am not prone to philosophical thinking. These are not pearls of certitude.I am pleased to be here to see another birthday, another heartaversary, and another cardiologist.Some words to leave you with that are powerful to me: Without the organ donor, there is no story, no hope,no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope, and a terrible loss becomes a gift. --United Network of Organ Sharing.

Monday, January 26, 2015

First of all, I'm grateful to be here to enjoy life in the desert. It has been nearly five years since heart failure literally stopped me cold. A HeartMate II left ventricular assist device, a battery powered internal heart pump, kept me going for 1,161 days as I waited for a suitable heart for transplant. When you're on a transplant waiting list, there are no guarantees. The wait for me was just over three years but I am most fortunate. I am heart recipient number 788 in the University of Minnesota Heart Center's continuing transplant program, having received the gift of life June 8, 2013. But back to the desert. I've been hiking in the desert almost daily for the last several weeks.

The desert landscape is fascinatingly beautiful and potentially dangerous as well. The transplant team at the U of MN cleared me to travel out here and enjoy some warm weather. Warm at this time of year is in the 60s during the day. That's 60 degrees above Zero.

The desert is unique for a person more accustomed to leafy trees, flowing water, still water, flat land and rolling hills, and growing grass. Here, east of Phoenix, the mountains rise all around forming a valley. You can see a pollution film, a haze hanging over parts of the valley. It's common most days and causes breathing alerts.Breathing is actually a large part of the potential danger of the desert. For those with suppressed immune systems, airborne fungus spores are the menace. It's not the scorpions, poisonous snakes or gila monsters that pose the problem, but simple airborne spores. The spores are in the ground but after a rain the wind stirs them up. Farming, road construction, general construction activities disturb the soil and fungal spores, too tiny to be caught by the average surgical mask, come to the surface and can be carried hundreds of miles through the air. Therein hangs the tale. It's called Valley Fever and you never see it coming. The federal Center for Disease Control calls it a "silent epidemic." Persons affected often get a bronchitis or pneumonia-like condition. There is no proven vaccine. The disease usually clears up on its own but it can recur or be permanent and is sometimes deadly, especially for those with compromised immune systems.Oral anti-fungal medications for humans have proven effective in serious cases. But dogs and cats as well as all mammals in zoos and in the wild are susceptible.The endemic areas where the infection is present includes the southwestern United States: Arizona, New Mexico, Utah, Nevada and California.Two state prisons in Southern California on the western edge of the San Joaquin Valley recorded 3,000 cases per 100,000 people in 2005-06. A lawsuit against the state for permitting inmates to be subjected to Valley Fever conditions. A receiver appointed to oversee the prisons ordered susceptible inmates to be moved out of danger.The incidence of Valley Fever varies widely. Here in Maricopa County Arizona around Phoenix there were 3,450 cases reported in 2007, which converts to 1 case per 100,000 persons in an estimated population of 3.8 million.By contrast in New Mexico there were 35 cases reported in 2008 and 23 cases in 2007. Those figures are for the entire state and converts to 1 case in 56,685 persons. The estimated population of New Mexico was 1.9 million.Valley Fever incidence is on the rise nationally. In 2011 the reported number of cases nationally was 42.6 per 100,000 persons.That was an increase from 1998 of 5.3 per 100,000 people. That's a significant almost explosive increase.As for prevention, that is a difficult question in a Valley Fever endemic area. If you're here, you are potentially exposed. So stay out of blowing dust and dust storms. You can see the serious dust storms--haboobs--coming from 20 to 30 miles away. They don't happen often, fortunately. Since you cannot see the micro sized spores, stay out of high wind situations.

Tuesday, December 2, 2014

The focus of this blog has been living with an LVAD and, now that I have a new heart, life beyond having a left ventricular assist device. The world of transplantation of solid organs--kidneys, livers, hearts--is undergoing landmark changes. Remember that one in three persons on a heart transplant waiting list will die before he or she receives a heart. Others die awaiting other solid organs as well.A friend got a liver via transplant and is doing well. I've been posting about heart transplants but saw an article in a British newspaper about a live birth from a woman with a transplanted uterus. And two mothers in Britain have donated their uteruses to relatives who could not conceive a child.It happened in Sweden and will be reported in the British medical journal, The Lancet. A British woman is expected to give birth later this year in the same manner with a womb transplant.Then there was the news from Australia that surgeons successfully transplanted three heart that had stopped beating, essentially a cadaver heart or a dead heart. The process involves injecting a specially formulated solution into the "dead" heart and then placing it in a box that supplies it with blood and nutrients until it can be transplanted. It took doctors 12 years to develop the method. So far it has been used only in Australia.As it is now, the basic practice is to remove and place on ice for transport, and to transplant a donated heart within a few hours of the time it is taken from the donor. Icing the donated heart can cause damage to the muscle tissue of the organ, making it more difficult for the recipient to recover fully. The "heart in a box" technique could minimize damage to the heart muscle and aid in recovery.Miraculously, I received a heart transplant after 38 months and six days with an LVAD. Apparently my new heart was damaged during the "keep it on ice" process, because it didn't work properly for a week. At a year and a half down range from transplant, things are going well. But as the immortal Satchel Paige has been quoted as saying: Don't look back. Something might be gaining on you.

Wednesday, September 24, 2014

The organ transplant program in the United States is based on the spirit of volunteerism. That is not the case in other parts of the world. This post is about China's murderous system of organ theft from live "donors."We have an "opt in" system in the United States. If you want to be an organ donor in this country, you have to say so. Typically, a person wanting to be a donor, says so on his/her driver's license. Telling next of kin, family, or significant others that you want to be a donor is acceptable. Even those who make no election before they die can have their organs (heart, lungs, kidneys, liver, pancreas, bone marrow, skin) harvested with approval from next of kin. The U.S. system uses only volunteers, there is no coercion.However, electing to be a donor on one's driver's license guarantees nothing. A person has to die under "hospital conditions" and be on life support to be eligible to donate anything. Those who die in traffic accidents, for example, do not qualify. Their organs die with them. Live organs are required.Most European countries have an "opt out" system of donor registration, meaning that all drivers are prospective donors. They must physically "opt out" of the system telling the driver licensing or other authorities that they do not want to be registered donors. It is still a voluntary system.China's "system" is a different story. Organ transplants are a growth industry sanctioned by the Chinese Communist Party. The government sponsors the collection of organs, hearts, kidneys, livers among others from live prisoners. There is no "voluntary," (not to mention) lawful system of organ collection for transplants. The "business" of organ transplantation involves the prisons, military, police, and doctors and surgeons and hospitals. They all collaborate to traffic in human organs. With its population of 2 billion or so prospective donors, China's prison system targets organs of all types. Organ trafficking is lucrative. China has no organized system of organ donation.Mostly the targets of forced organ donation have been adherents of Falun Gong, a spiritual movement founded by Li Hongzhi, now 63. He has since left China and lives in the United States. Falun Gong is based on Buddhist teachings and discipline. Practitioners combine choreographed "slow" movements and meditation with a moral philosophy based on truthfulness, tolerance, and compassion. Master Li first taught the practice publicly in 1992 in northeast China. Soon Falun Gong adherents exploded in numbers, exceeding membership in the CCP. Adherents were persecuted by the government.The Chinese Communist Party saw the movement as a national security threat and in1999 the CCP began a push to exterminate. Falun Gong practitioners in all of China.Amnesty International said the CCP launched a multifaceted extermination campaign that included anti-Falun Gong propaganda, a program of enforced ideological conversion and re-education, forced labor, arrests, torture, even death to those who would not renounce the movement. Torture and death of Falun Gong practitioners became a ready source for organ trafficking.A Wikipedia article on practitioners of Falun Gong reports that: "A...(special unit of government) called the 6-10 Office was created to lead the suppression of Falun Gong. [A]uthorities mobilized...state media, judiciary, police, army, education system, families and workplaces against the group."...There are reports of systematic torture, illegal imprisonment, forced labor, organ harvesting and abusive psychiatric measures with the apparent aim of forcing practitioners to recant their belief in Falun Gong."It has been estimated that Falun Gong practitioners, numbering in the millions, have been targets of what amounts to a pogrom. Easy pickings and easy profits for dedicated organ traffickers in search of "matches." Transplants are arranged by middlemen between forced donors and those, mainly tourists, seeking a transplant. Specific dates for the transplant operation are selected in advance.When a "match" occurs, hearts and kidneys are literally ripped out of the targeted "forced" donors. The organs are then sold for transplants. Prison populations, where Fulan Gong inmates makeup a large percentage of inmates, are culled for donor matches. When a client, willing to pay tens of thousands of dollars for an organ, the search and collection process kicks into high gear. A prisoners' health data and blood type cause prison officials to select them for involuntary donations.It has been reported that prison officials and police, who get money for organs pillaged in this way, create conditions and circumstances where the targeted "donor" is forced into physical decline. Selected prisoners are killed over short period of time by their mistreatment, malnourishment, drug therapy that doesn't effect the organs' viability.There is a group dedicated to ending the lucrative practice in China. Its called the International Coalition to End Organ Pillaging in China. Ethan Gutman is one of the directors of the IDEOPC. As a journalist, he's been doing research of China's organ donation/transplant system. In his book, The Slaughter, published last month, Gutman estimated that some 65,000 Fulan Gong practitioners were "killed" for their organs between 2000 and 2008.The CCP considers the death of a Fulan Gong practitioner as "suicide," giving hospitals the right to harvest organs without any formal procedure. The organ harvesters can schedule the "murder" of a donor to permit the "tourist" recipient to make travel arrangements. The wait for an organ in China is typically one to four weeks, while in he United States, it may be years for a would be recipient's wait on a transplant list. In fact at least 18 people die each day in the U.S. waiting for a life saving organ.I'm reading Gutman's book so there will be more to this story.

Saturday, September 20, 2014

Having a new heart gave me a second chance. A gift of life. By themselves, second chances are rare. I'm not talking about do-overs but continued existence in the here and now.A second chance for life is a magnificent gift and I am grateful everyday. I am hopeful that all my brothers and sisters with LVADs who are eligible for second chances, get them. There are things that matter that a new heart's potential makes possible.For example, while I had my left ventricular assist device, my wife and I were able to see, talk to, hold and hug our granddaughter, Aria, now 3 1/2 (going on 25), a couple of times. Travel by air was an ordeal with my bionic device and all the gear I had to carry.This year Aria came to our son's August wedding with her mom and dad. They traveled from Connecticut to Fargo. It was a delight being around her. We even danced at the wedding. I'm six feet tall and she is about 3 feet tall, which is stretching it a little. In the end I held her in my arms and cut the rug. We had fun, fun, fun (and no one took the T-bird away, with apologies to the Beach Boys). A new heart brings hope.There is some good news about left ventricular assist devices.Thoratec, the California based developer and manufacturer of the HeartMate II, which kept me alive for 38 months plus, is now testing the HeartMate III in clinical trials. LVADs are hope perhaps the only hope for those who need a new heart.The new device aims to solve some of the issues that surfaced with the HM II, such as reduction of friction (which causes wear and heat), and "friendlier" blood contact surfaces that ease the flow of blood without shredding cells (the point of this is to keep blood clots from happening in the pump). Meanwhile, some 17,000 cases of heart failure have been helped by the implantation of HM II. No small feat. The implantation of LVADs has surpassed heart transplants. Here is a link for further reading: http//www.thoratec.com/vad-trials-outcomes/ongoing-clinical-trials/hmiii-usa.aspx